Back in December 2002, Lou Fulkerson was diagnosed with ocular melanoma, a rare cancer of the eye with only 3500 to 4000 reported cases a year*. He was treated with brachytherapy and his right eye was spared removal via enucleation. Lou's cancer was considered stable. Fast forward 4 1/2 years to 2007 and the cancer had returned. This time it was in his liver and inoperable. About 50% of ocular melanoma patients eventually have their cancer spread, nearly 95% of the time to the liver*. It can be years, such as in Lou's case, before ocular melanoma may reappear outside the eye. And though the primary tumor of the eye is usually successfully treated, once it spreads there is no standard treatment and no FDA approved therapies exist. The median survival can be 2-7 months*, especially in a case like Lou's where roughly 70% of his liver was consumed by cancer - "swiss-cheese style" as he puts it. Even so, he was given 6-12 months to live in March 2007, which wasn't that much better sounding to Lou either. So at the age of 34, and surely thinking of his wife and 2 young boys ages 6 and 8, he didn't like that answer.

Fortunately, Lou found hope at the National Cancer Institute, the US Government's cancer research center in Bethesda Maryland. The NCI offered him a clinical trial for Percutaneous Hepatic Perfusion (PHP), a therapy that infuses high dosages of drugs to the liver to treat various cancers, such as ocular melanoma. After meeting the strict requirements of the clinical protocol, Lou had his first PHP treatment in June 2007. After a couple more infusions his scans showed a 75% reduction of the liver cancer. He completed a few more successful treatments in early 2008 to help stabilize the disease in his liver.

This experimental therapy has given Lou an initial victory in his battle with this difficult to treat cancer. Since his treatment at the NCI, Lou has put weight back on and says he feels better than he has in awhile. Still he continues various therapies to help treat some cancer that has spread elsewhere in his body such as his bones, thankfully not as dramatic in comparison to the tumor burden originally found in his liver. Commenting on his current treatments, such as radiation for a small lesion in his brain, Lou says, "This becomes a prolonged game of Whack-a-mole. As long as it is prolonged, I'll take it."

Reliable information for rare diseases can be difficult to find. And considering the typical initial prognosis for metastatic ocular melanoma, time is not on a patient's side to become experts in the subject. For this reason, Lou has co-founded an initiative called Ride4OM to help raise awareness about ocular melanoma and provide support for patients and families. The goal of Ride4OM is to be an annual bike riding event for fundraising and increasing awareness, as well as being a meeting place for those affected by ocular melanoma. The proposed path is a 300 mile trail designed for non-motorized vehicles that stretches from Pittsburgh, Pa to Washington, DC. Washington symbolically is not far from the NCI, where Lou was and many ocular melanoma patients have been treated. It is planned to serve as the final day meeting place of the bike event for those that cannot participate in the ride. Though there are numerous fundraisers and events held annually for cancer awareness, it is believed Ride4OM would be the only of one its kind specifically for ocular melanoma. Ride4OM is working towards partnering with the recently founded See A Cure, which is believed to be the only organization founded by eye cancer patients and their families to fund research for and raise awareness of adult eye cancer. Ride4OM's first meeting is expected to take place in September 2008 to coincide with and support See A Cure's expected campaign for a National Eye Cancer Day.

Prior to that, Lou plans to do a mini test ride before hand in the next couple months and donations in his honor can be made to a fund set-up for him and his family. Come September, he hopes to do as much as the 300 mile ride as his health permits. Ride4OM's co-founder Tom Mowry has committed to the 300 mile ride, and Lou and he are currently recruiting participants for this cause. I am sure even Lance Armstrong would be inspired by comments recently made by Lou, "I can't walk on my right leg right now because of a lesion on the femoral cap. I start radiation for that tomorrow, so I should be mobile again by next weekend. I will start riding again soon after."

More information about the trial Lou participated in can be found at http://www.livercancertrials.com

To contribute, participate, or just for more info on Ride4OM please email ride4om@gmail.com or visit http://ride4om.blogspot.com/

For more information about ocular melanoma and metastatic ocular melanoma, please visit the See A Cure Foundation website at http://www.seeacure.com

"Regional treatment options for patients with ocular melanoma metastatic to the liver."
* Feldman E, Pingpank J, Alexander H
Ann Surg Oncol 2004; 11:290-7

See A Cure Foundation

Note added on the 27th May 2008
Sadly Lou Fulkerson passed away on Sunday 25th May, 2008.